The Big Bad Headache

I missed a week on the blog, but I have a good excuse. Thursday, July 31st, I went into the city for a Lumbar Puncture (AKA Spinal Tap). My neurologist wanted the LP to rule out all kinds of scary diseases he doesn’t think I have. I had to run around (or slowly traipse around) this huge hospital for blood tests and nurse visits, with aides walking me from one place to another. Hospitals should seriously consider Golden Retriever guides instead of humans – much more comforting, and just as capable of answering any questions I might have.

Delilah, my preferred Golden Guide.

For the test itself I was placed face down on a table, with a pile of pillows under my stomach. The Novocain shot in my back hurt the way it hurts at the dentist (meaning, a lot, but over pretty soon), but then I was tapped like a keg. I felt like a maple tree with a spout hammered into my back. Then the table tilted until I was almost standing up, and the cerebrospinal fluid started to drip out. Then the table was flipped forward, like a see saw, to check the pressure of the fluid. Then back for more dripping and forward for another pressure, then finally flat, tap removed, and transferred to a stretcher to be wheeled to recovery to lay flat for an hour.

The explanation for the hour on my back was that it would help avoid a leak of spinal fluid that would lead to a bad headache. I assumed the headache would come on soon, if it was going to come at all, so when the hour passed I began to think that (for once!) I’d fallen on the good side of the percentages and wouldn’t have a bad reaction to the spinal tap.

All day Friday I rested with my puppies at my side, because the doctor had told me to avoid too much activity and because I was exhausted. I felt a bit dizzy, but I was still congratulating myself for not getting the terrible headache.

Cricket was supposed to be my foot rest here.

Saturday morning, Cricket woke me at five AM I felt a bit odd, but I usually do at five AM. I tried to go back to sleep, but with each hour my head started to hurt more, until I tried to stand up again and the world exploded.

I couldn’t walk much further than the living room without extreme pain, but I still thought that if I took Tylenol and drank caffeine, as recommended, the headache would pass.

When I woke up on Sunday morning, I tried to stand up and the pain was crushing. That’s when I started to panic. It felt like an alien creature was crawling through my skull and sticking its rhinoceros-tough fingers through my eyes and ears and down my throat. I took pain pills and Pepto Bismal and drank caffeinated tea and tried not to listen when Mom mentioned the emergency room.

At some point, I don’t know when, I started to throw up, a lot. There was a pink puddle on the tile floor of the bathroom, with little islands of white pain pills floating in it. I went back to my room to lie down and the puppies piled on top of me, but I had to move them to get to the bathroom and throw up again, and again.

Mom called my neurologist and his colleague said to call an ambulance and go to the emergency room, for a procedure called a blood patch, where my own blood would be taken from my arm and put into the epidural space, to stop the leak of spinal fluid. Somehow they had forgotten to warn me that the headache would come on after a few days, and that it would be a positional headache, meaning that any time I lifted my head, bombs went off.

The paramedic came with two police officers, and I could barely get out of bed and into the wheel chair, where the vomiting continued as they carried me down the stairs and out to the ambulance. Everything was blurry because I couldn’t wear my glasses, but Mom told me later that the towel that magically appeared in my hands came from our very kind downstairs neighbor.

There’s something about extraordinary pain that makes you lose all vanity. You do not care that vomit is dripping from your face, or that you’re still in your sweaty pajamas and you never brushed your hair. Who gives a fuck, just help me!

At the hospital, eventually, something was injected into the IV in my arm that calmed the nausea, and Fioricet and constant fluids were prescribed for the headache. Then the pain management specialist/anesthesiologist came over to tell me that the OR was closed on Sundays, so I would have to stay over night for observation until he could get me scheduled for the blood patch on Monday. Bye.

The ER doctor explained, in the aftermath, that I was better off staying in the hospital because if I tried to go home I was very likely to destabilize and end up back in the ER.

Mom went home to walk the girls and to bring me some things, and by the time she came back I was much more coherent. She brought me a picture of Butterfly with a sock in her mouth, because Butterfly had run into my room, picked up one of my dirty socks from its home next to the laundry basket and then ran to the front door with it. Because she missed me.

“Mommy forgot her sock!”

One thing I noticed about being in the hospital: no matter why you are there, every nurse, doctor, aide, and PA asks about bowel movements. Some of them press a stethoscope to the belly to listen for interesting noises. I had to apologize to them for my quiet belly, and explain about the amount of vomiting I’d done, without much subsequent eating. I felt like an underachiever; though I was peeing constantly from the fluids, so I wasn’t a complete disappointment.

My neurologist called from the city on Monday to tell me that the results from the LP had come in, all clear. So, sorry, but you seem to be going through all of this for nothing.

More blood was taken, for some unexplained reason, and a surprise CT scan, and blood pressure checks every five minutes, so I was kept busy until it was time for my procedure in the afternoon.

The anesthesiologist came by before the blood patch to explain that this would be more painful than the original LP, but hopefully successful at patching the leak, and ending the headache. Hopefully. For this procedure there was a pre-op nurse, two OR nurses, a post-op nurse and a few other people who didn’t introduce themselves. The head operating room nurse had pictures of Butterflies on her cap and Mom took that as a good sign, that my puppies were with me in spirit.

“Where’s Mommy?”

The operating room was very bright, and huge, and intimidating, especially with my face down and half my butt sticking out. One of the nurses held my hand and patted my head, while the doctor shot me with Novocain and started to dig into my back with a needle. Then he was taking blood from my arm to insert into the epidural space, and decided to tell his colleagues about the guys who first discovered that shooting cocaine into the spinal column could cause such pain relief that you could hit each other in the legs with baseball bats, and squeeze your gonads with pliers, and not feel a thing.

Then he went back to sticking needles in my back and hitting them with hammers and squeezing lemon juice and razor blades under my skin, or whatever it was he was doing back there.

When it was finally over, I still felt like there was an axe embedded in my lower back, but after the required hour of lying flat I was eager to sit up and prove that the headache was gone and I was ready to go home. I felt like a pin cushion and didn’t want to spend another night in the hospital and risk more surprise procedures. It took until 9:45 PM for the discharge papers to come through, but I finally got to go home to my puppies and my own bed.

Cricket can make anyone into a pillow.

I was proud of myself for managing well, for communicating clearly and talking to a million people and doing everything I needed to do, but having Mom with me made all the difference. Everyone should have a Mommy like mine. But I still think there should have been puppies at the hospital. I don’t know what they’re thinking not having puppies on staff.

What a terrible ordeal, Rachel! You certainly are a brave soul, and I totally agree that dogs should replace most orderlies on hospital staffs! Thanks for sharing this touching story with kudos to you, your mom, and your little pups.

In Sri Lanka one or two wild dogs wander about the hospital and mix with patients and staff. No one takes any notice apart from the secretary who feeds one of them. It all seemed a bit odd to begin with, but after a while I recognised it as the norm.

I am so empathetic Rachel, having suffered phenomenal “out of this world” pain on numerous occasions. You are in my Healing thoughts along with your awesome Mom and the puppies, and by the way, I so agree with Golden Retriever guides, for they would not only do the job better, they would give Healing at the same time Lol.<3 ❤ ❤

Urgh. I am so sorry to hear this Rachel. LP’s are truly awful things, despite how many times they tell you before you have your first one, that they are absolutely fine.
I hope you continue to feel better and better though, you’re not alone!
Hugs, Carrie and Pups x

I got so many reassurances before the LP, with doctors telling me it would be no big deal even if I did get a headache. there’s got to be a way to make the LP a safer procedure, given how necessary it seems to be for diagnostics. Maybe just inject some rubber cement after the tap to prevent the leak from forming?

go through all that and they still do not know. I have migraines and took tylenol for them. I ended up having a seizure. I found out that tylenol will give you a rebound headach worse then a the one you had, also it can cause seizures. Asprin is the best for migraines

A rebound headache?! And seizures?!! Lord. The Fioricet they gave me for the spinal tap headache has Tylenol, caffeine and some kind of barbituate in it. I guess they figured they could treat me for the side effects as long as I was in the hospital. Craziness.

OMG I’m so sorry you had to go through such a horrible ordeal, Rachel. You are a seriously brave person – I wouldn’t even have the strength to endure the initial tap. You’re an amazing woman. I’m becoming increasing disillusioned with the medical community – I’m hearing “We don’t know” about more things from more people, and then the doctors just walk away, not even trying to get an answer. I really pray you don’t ever have to go through anything like this again. Daisy sends puppy kisses.

One of my doctors said, a few years ago, that the current state of medicine, with everyone compartmentalized in their own disciplines, is making it very hard to treat people who have anything but the most obvious, textbook problems. Ideally, doctors would communicate with each other more and try to see the whole picture, but it doesn’t happen very often.

I asked my brother about that when he was in medical school, as in, what sort of classes do they give you in how to treat patients with compassion? His answer was, basically, none. He had a great mentor later on who taught him more about talking to patients, but it wasn’t a regular part of the curriculum.

I was lucky with the LP itself, nothing like the torture you went through. The blood patch on the other hand…makes you wish doctors would take a little more time to practice on inanimate objects before moving on to actual people.

Yikes! What a horrible experience! There are such things as hospital therapy/ambassador dogs — my SIL, who is a surgeon, got her mini Schnauzers certified. They can come with her to the hospital and visit with patients. I want her to bring them to me if I ever have to go in!

omg I am so sorry. I have been wondering where you’ve been. I am sending a big Pittie slobbery kiss and a warm snuggle. Sending you best wishes for better health. (Mom suffered with migraines for years and years, so she can kind of relate to “the headache” but she is sure yours was much much worse!) Rest up and take care. Lots of love, Maggie

OMG, this sounds horrific. So sorry you had to go through all of that just to find out that your CSF is normal. Hope you are feeling better and back to being able to play with the puppies! Happy thoughts & well wishes coming at you thru cyberspace from Montana!

Reblogged this on Barbara Harms Creative Fiber Art and commented:
I laughed so hard at your comedic commentary. Wry, a pinch of sarcasm, an honest appraisal of our own occasional experiences, funnier because we “get it”. You don’t hit us over the head with it, but let us discover them on our own as they sink in. I MUST re-blog! Rach this is classic story telling, a formula for comedic writing. As an aspiring blogger who doesn’t want a site that is solely a long boring commercial to showcase my work. [Yes in all honesty that is part of the goal] but.. I want to make it entraining & fun as well, so… I can’t pass this one up. You did a bang up job as skilled author and writer. You got game girl!!!

orous take, seeing a situation and being able to see some humor in it relieves tension, We can enjoy her sardonic observations as she is bestowed with the latest medical care and a nurturing healing spirit Her dogs would have provided a large dose in the nurturing dept. Rachel’s commentary will make you read on to find the next little twist. I laughed so hard at your comedic commentary. Wry, a pinch of sarcasm,an honest appraisal of our own universal experiences, hence relatable& funnier. We “get” it. All presented with wry subtly humorous observations. I MUST re-blog! Similar to my own, I’m dying to throw in my 2 cents worth. Rach this is classic story telling, a formula for comedic writing. As an aspiring blogger who doesn’t want a site that is solely a long boring commercial to showcase my work. Yes in all honesty that is part of the goals, but.. I want to make it entraining & fun as well, so… I can’t pass this one up, have to re-blog. You did a bang up job as skilled author and writer. You got game girl!!!

As I re read your post, I thought my comment might come off a little caviler,I feel so bad that you went through such a horrible experience. As I read through it initially what struck me was that you were able see humor in such a distressing situations. How does one do that?I went through a very similar experience about 8 years ago, my killer headache was more pain than I’d ever felt. Couldn’t dare move off my couch, ice pack on my head not 1 rx painkiller did a thing,even morphine. it was weeks Nightly trips to the emergency room at hospital for a pain shot then next day the dr, waste of time. thing. Finally after they just didn’t know what else to try, the spinal tap. I never felt much discomfort with my head exploding like it was.SI did not find any humor and that is probley why you amazed me..

Thank you so much for the re-blog! My brother trained me to makes things funny, because he wouldn’t listen to anything I said until I could make him laugh. When I got the first half smile from him (in my late teens!!!!) I felt like I’d won an Oscar. And I’ve found that, if I practice, humor allows me to go into darker and darker places without losing myself and losing hope. It’s a balancing act, and sometimes I fall too far into trying to find the humor, and sometimes I fall too far into the pain, but when the balance works, it feels wonderful, and satisfying.

I’m so sorry you went through that, my mother had four (!!) back surgies last month to repair a leak in spinal fluid. She spent nearly a month combined between hospital and rehab. It was really terrible, and she only just graduated from a walker to a cane lol. I’m glad you had your mom and your pups to help you through this ❤

OMG! First of all I am glad you are ok! But what you went through is my worst nightmare.Having had 3 cancers, I often joke that there is NO procedure that I haven’t had, and my top never again test was a barium enema with air contrast….I always had spinal tap in the back of my head and prayed it would never cross my path….I love the shot of butterfly with your sock. My Zush was 10 when I had both knees done and she was never vocal until I came home from rehab with the knees- she missed me that much. Anyhow, cast my vote with yours for pups on staff! xxxooo

Oh my! What an ordeal! I didn’t know whether to cry or laugh. I’m sorry you had to go through all that. Oh, and the picture of Butterfly with the sock, is just too sweet ❤ Hope you're feeling better by now and cast my vote too with pups on staff!

Back in time a bit, I had Lyme Disease, and experienced much the same ordeal as you. I can’t say it was a bad headache as it felt like my head was going to blow off my neck! And by the time we reached the hospital . . . I was wishing it would, to just get it over with!
You stopped by my blog today and that’s how I found yours. I’ll look around a bit while I’m here, as besides the headache episodes, we both seem to adore dogs!

Hi Rachel, I was writing to thank you for liking my new painting that I posted. But I was very taken with your post about your ordeal describing your suffering. I hope you continue to feel well. I can relate very well as I too suffer from some painful and weird neurological problems.

Hi Rachel. It’s been awhile since I’ve been reading your blog as I had chemo to treat my auto-immune disease over Christmas and while it was pretty mild-mannered, chemo brain hit afterwards and it’s been really hard to get my head back into gear. I had such a mix of emotions reading your post. I have a shunt in my head and I’ve had a needle into that which was absolutely seering pain but haven’t had a lumber puncture. After my health misadventures, I see a real need for humour to get through and to poke your tongue out at the horrors and personal indignities you experience. When I was having chemo, I joked and called it chemo for Christmas but in all honesty, it was the best Christmas present I could have had. More than anything else in the world, I wanted to buy some time with my family!!
On the dog front, I am now well enough to walk our border collie for the first time in years and he is now 8 so is slowing down. We started looking for ideas for a second dog and as I result I ended up with ads of puppies flashing up at me every time I played online scrabble. We were looking for a smaller dog but still love Border Colliies and then one night a 2 year old Border Collie cross Cavalier King Charles Spaniel popped up. Her name is Lady and we pick her up in two weeks. She has been living on a farm and still lives with her mum so it could be a challenging adjustment for her as well as our old boy who will be getting his first girlfriend rather late in life. I will be reading your blog a lot over the next months to get some ideas. Take care and I hope your health issues resolve well. xx Rowena

hello rachel its dennis the vizsla dog hay wow that all sownds perfektly awful like they are tortchering yoo in the naym of mayking yoo feel better!!! i do not unnerstand hyooman medisin at all!!! ok bye

That is so horrible — I hope that you are on the mend at last and that the pups have you home so they can work their healing magic! I’m honored that you had the energy to visit my blog and like it — I hope “There’s a Hole in the Sofa …” brought you a giggle to brighten your day. Hope you are feeling better!

wow Rachel – what an experience – and not a good one. It didn’t seem they actually found a cause to the problem though or was I not reading it properly – to be honest I was rushing to the end and then back up and down, ensuring you were going to be ok! Puppies/dogs are amazing though aren’t they. They totally know when we’re down and when we’re unwell. Glad to hear you are better know and truly hope there is repeat of that drama ever again in your life. Wishing you all the best and hugs to the fur children.

No diagnosis yet, and it’s driving me nuts. But the girls are keeping me happy and distracted, waking me up while it’s still dark out, barking at me every half hour if I dare to take a nap…Thanks for thinking of me, it makes such a difference to be able to talk/write about what’s going on and not have to feel alone.

Oh Rachel that was an awful thing to go through, you are a brave Lady.
Wishing you well and I hope it turns out well for you.
Take care and hugs to you and your mom. x
Those girls are adorable good to see you home together.

OMD mum thinks she will run a mile if anyone ever wants to do that to her, well, if she’s able to run a mile. That all sounds like a total nightmare but I guess it’s an ‘I’ve started so I’ll finish’ kind of thing, you can’t say no thank you part way through. Makes you wonder why they don’t just do the blood patch thing ‘just in case’ anyway. Feeling a bit queasy here now…. probably shouldn’t have read this. Hope they get you sorted soon.